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New to sight and many many questions

Hi all, I am a 65 yr old female who has had scoliosis since I was 14. It never hinder me in my daily life. I have seen a chiropractor and massage person for the past 40 years. I walk about 10 miles  a week, lift light weights, swim, and do a yoga class for scoliosis once a week. I do have minimal pain, but it is very managable. Have not had my back xrayed in 40 years. My massage therapist said I should go get a baseline... So, I went to a spine doctor. I have a lumbar curve of 45 degrees. He said that I would need surgery, or be in a wheelchair for the rest of my life. Not too excited about his diagnoses, especially since I am still so active. I have an appointment with a neurosurgeon in a few weeks. When does one know if they need surgery?  Don't want it unless I really need it, but also don't want to be 80 when the pain hits....

Thanks

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Comments

  • LizLiz Posts: 2,313

    Welcome Kimbohc  we’re glad you’re here!

    While you’re waiting for a reply to your first post, please take a few moments to review the Code of Conduct and FAQ section, located under Forum Tools. There you will find important information about posting in the forum and helpful tips for new members.

    Have you seen the Scoliosis Health Center on Spine-health? It features a list of doctor-authored articles about different types of scoliosis and scoliosis treatment options. It has a lot of really helpful information about scoliosis.

    Again, welcome to the Veritas Health Forum.

    Liz

    Veritas Health Forum Moderator

  • Kim, you're incredible. My situation has parallels to yours. I'm 73 with severe lumbar scoliosis, degenerative scoliosis, and arthritis. You are wise to have a baseline x-ray. (Download it to your own records for future use.) I've consulted a slew of orthopedic and scoliosis surgeons in recent months in connection with hip replacement and actively worsening scoliosis. 

    First, kudos for being proactive with your therapies and bodywork. You've already found the formula for avoiding or postponing spinal surgery. Bravo! Keep up the good work.

    Second, when does one know if they need surgery? Trust your body to tell you via pain or numbness, compromised organs, or inability to function "normally" (your version of normal).

    Third, I've learned the hard way that: 

    (1) Surgery comes with no guarantees and many MANY risks. 

    (2) A surgical correction to one part of the skeleton may have unintended consequences for another part. 

    (3) Doctors do not know everything - especially about adult scoliosis - although they insist that they do. Historically, most research has focused on juveniles. Aging boomers with lifelong scoliosis are a relatively new subject of research. I'm enrolled in a new long-term study of the interrelationship between scoliosis and hip replacement. The doctors are still learning which questions to ask. Answers may be decades away.

    (4) Every scoliosis is different and the imaging technologies - altho amazing - don't tell the whole story. Static images don't show how your body functions with its unique architecture.

    (5) Surgical techniques and recuperation protocols are frequently improved. When it IS time for surgery, it's worthwhile to seek out the very best surgical team - even if it means travelling to a different market. That's a whole 'nuther topic.

    (6) Many doctors have "silo" mentality. They are so focused on their specialty, they don't see the whole body. They also don't value lifestyle and alternative therapies. It's no surprise that surgeons are wired to recommend surgery, when a heel lift or a walking stick could be used to avoid surgery. You are wise to be suspicious.

    (7) Life has no guarantees. You've learned how to SUCCESSFULLY manage your scoliosis without surgery. You may never have debilitating pain or need a wheelchair. You don't know if you'll live to be 75 or 105. 

    Fourth, in my case, Medicare Plan F plus supplemental insurance have paid for many consultations, many images, and two hip replacements (caused by scoliosis) - for which I've paid nothing but insurance premiums.

    Wishing you clear seeing in your quest for medical evaluation. Good luck, Sharon



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  • memerainboltmemerainbolt IndianaPosts: 3,489

    Hi Kimbohc!

    I am so sorry you have developed this at your age. I was diagnosed with scoliosis like you, at the age of 65. But mine is at every level, cervical, thoracic and lumbar, with a curve of 45 degrees. 
    My neurosurgeon told me he normally waits until a patient is at 50-55 degrees before doing surgery. I got 4 more opinions plus asking my family for their opinion. Because of my other health and spine issues, I decided not to have surgery. 
    My pain was so bad that I had to have a pain pump implanted over 2 yrs. ago. 

    I am glad you are getting another opinion and that you only have minimal pain. There are other members that have had this surgery and hopefully they will reply also.

    Take care and please keep us posted.

  • Hi Kimbohc - welcome to a great forum!  But sorry you had to look for us.  Anyway, I was diagnosed with a 51 degree lumbar curve when I was 58 years old.  Two years earlier there was a slight, maybe 20 degree, curve that was randomly found and no one said anything about it.  I had no pain and really no awareness there was any issue with my spine. But then over the course of about a year I had pain in my calf that was increasing. It got to the point I couldn't stand for more than a couple minutes before the pain was at a level 10.  Walking, sitting, laying down and even just bending over relieved the pain but standing upright and still was next to impossible. I decided to see an orthopedic spine doctor when I asked myself it I could live with this pain for the rest of my life and my answer was "No".  Because my curve was a rapid onset and moving quickly and my pain was increasing AND I was post menopausal, we opted for fusion surgery.  My point is everyone's situation is unique to them.  It usually isn't just a black and white matter. There are many factors that go into the decision of 'when' or even 'if' to have surgery.  In my case, I believe all my indicators were pointing to surgery.  My outcome was excellent and my recovery uneventful.  

  • Hi Kimbohc

    Welcome to the group. Sorry you need to be here, but you will find lots of suport here. I am 60 yr old female who had the surgrey in dec 2016, fussed from t9 to s2 with the pelvic ficsation. I was 57. My cruve was 60 degree and a sevond curve had formed at 22 degrees. When i was 46 degrees and with just the big c i started to have messurement every 6 months. We were watching it and monitoring the pain levesls.

    I made my dicission based on the fact thst my curve was increasing, and i formed a second curve moving from big c to an s, but i was still avtive in yoga and working out., I had all ready givin up running..that was hurting too much. Each moth i could do less in yoga, and the pain was increasing. I made the discsion to try thecsurgrey while i was still strong, before i lost too much so i would have a better odds atvrecovering more back after the surgrey. 

    So thats how i did it, i told my doc i wanted to wait as long as i could with out doing too much damage. And that is hard to know..you just need gontalk to docs, monitor the curve and how much itvis moving and add in how much pain youbcan handle, plus are any orgsnse being hurt, such as lungs with teisting..there is noneasy answer and it us diffrent for everyone.

    But..45 dose not mean you have to have it now..for it is life chsnging surgrey. I still wish at times that i would of waited just a bit longer, but then i relize i could of waited too long and had more perminte damage.. my story and ups and downs is on this fourms if you want to read it. Or, just ask me any question.

    Do know, it is very hard to walk away from this surgrey with out some nerve damage. I have some numbness in my legs and left foot with some foot drop there.. i am still trying to make myself stronger with workouts at gym 3 times a week when i can.

    Good luck, here to suport you any way i can.

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